Bailee

Thank you! I’m doing so much better! I’m walking my dog doing exercises 3 times a week. I really appreciate your support and this page , don’t know what I would do without it!!

Tips for newly diagnosed? My cousin was recently diagnosed with pots. I’ve been dealing with it for couple years. What advice should I give her? Is there anything you might have wanted to hear or any advice that may have helped in the early stage of your journey? Any tips that made management of a chronic condition easier?

Hello I had a pots question. I recently started physical therapy which has been great. The physical therapist has a daughter with pots. We’ve really been working on getting exercise without my heart rate spiking about 80-100, doing slow isometric movements with recumbent bike which is different from the plan I was given by my doctor to walk with 125 bpm heart rate 15 min a day a struggle honestly. However we are noticing my oxygen drops when I walk. When I first come in to see her she checks it it’s low 90’s. Today when transitioning from the workout area to the bike area while walking it dropped again 98-94. It’s constantly low when I first come to see her as she checks my vitals. Her theory is that it happens when I walk which could explain why I struggle with symptoms and fatigue with walking. Does this happen to anyone else. We tried to different pulse oxygen machines to make sure it wasn’t the equipment same thing keeps happening.

Is there anything you told the physical therapist specifically. Because I called a center near me and i told them I had a referral from my doctor me she wrote pots to strength my legs and conditioning the lady who answered was confused and said they need her to specify what I needed done

Has anyone had any luck with physical therapy? My doctor wants me to do physical therapy but I want a physical therapist that specializes or somewhat knows what pots is?

Could my ivabradine be contributing to my lightheadedness/fatigue. I know beta blockers can cause lightheadedness and fatigue even though with pots you still deal with those symptoms? Ivabradine is helping but lightheadedness still there

My sister keeps insisting that I try the natural route of medicine to cure my pots . I’ve been very apprehensive due to her inability to provide me with proper research regarding natural medicine helping my autonomic nervous systems in the same way midodrine and ivabradine does. I asked her what is a natural alternative to beta blockers she couldn’t give me an answer just that plants can provide same benefits as the synthetic medication I’m taking. I’ve tried to explain to her I’m comfortable with taking medication as it’s my body not hers but she won’t back down. Any advice? Has anyone cured their pots ??

Thank you to everyone for the suggestions. I have been checking my blood sugar with a meter everything has been relatively stable/normal. So I’m thinking it’s just unfortunately the Orthostatic intolerance/pots.

I’m trying to see if my blood sugar is dropping when I stand/walk around. Was trying to do some holiday organizing/cleaning. Got lightheaded, shaky/tremor, hot flashes, confused. I checked my vitals blood pressure wasn’t dropping. I know with pots you can feel lightheaded despite vitals but can the irregular autonomic nervous system be affecting my blood sugar. Or is this just Orthostatic intolerance?

I have an appointment on January 17th. I just wanted some guidance on what to ask ? Or if others have had similar experiences? My doctors have been saying deconditioning for a year, despite being on a cardiac plan and meds. I’m a year into my diagnosis and q year on treatment/ medication. They told me in June that they couldn’t give me answers as to why I’m deconditioned or how long typical deconditioning last. My most prominent and life altering symptom is my lightheadedness/orthostatic intolerance. When I’m out with family or even cooking at home I don’t have the stamina to do daily activities despite being on midodrine 5mg 3 x a day, ivabradine 1.5 mg a day, salt 8 grams a day, compression socks, and leg strengthening exercises. I’ve tried metoprolol which decreases my blood pressure to much. The midodrine helps with energy but I still feel awful even when my blood pressure is normal (I’ve been keeping track). My QSART was abnormal but biopsy said no small fiber neuropathy. I’m just at a standstill as I’ve tried most of the meds they can give me at the clinic so I’m worried there’s nothing they can do .

Anyone have chronic upper back pain. I’ve been having bad back pain with twitching all over my body. All levels normal according to pcp have to wait to see neurologist until January 16 unfortunately.

Update: I’ve also noticed that the twitching is more intense after my walking treadmill workout. My legs and thighs will start twitching like crazy almost like the nerve signals are firing rapidly. It last about 45 minutes to an hour. I also noticed I get almost like blood rush or pulsating feeling up my spin afterwards when I’m sitting and recovering.

Been experiencing twitching for the past 2 months. Say my pcp and she ran labs only thing low was my alkaline phosphatase and blood urea nitrogen (b.u.n) advised me to see my neurologist if everything came back relatively normal. Is this a pots thing? Not like tremors or spasms but like a nerve signal tapping making my leg and all randomly throughout my body. Not painful but annoying.

Anyone know which is better for chronic illnesses? Walgreens vs a local neighborhood pharmacy? I only have 4 prescriptions all 90 day supply. Trying to pick between the two. Walgreens is more convenient but in the past at a different location I had trouble with colanor prescription when I call to refill saying they can’t find my prescription? Don’t know if this is different at different locations? Found an accredited pharmacy 5-11 minutes away from me. Seems very community driven with great reviews praising staff. Think I know which is better but would like to hear what route other people go/ other experiences?

I’m on midrodine 5 mg x 3 a day. I know tingling is a side effect. But I only get tingling when I’m walking /moving upright and dizzy. Like for example when I’m trying to cook and moving around in the kitchen the tingling sensation comes on. Is this normal to only have tingling when upright and lightheaded

Was having my care overseen at Cleveland Clinic asked about sending in bloodwork to get levels checked due to twitching all over my body and the nurse said to get it done with a pcp and that a pcp should be taking care of my bloodwork however my doctor hasn’t had a problem in the past getting blood work sent to Michigan for me. My doctor was supposed to be checking my bloodwork while I’m on my colanor medication. The doctor also canceled a very important virtual appointment I had scheduled three months in advance due to concerning symptoms I had. I was told a scheduler would contact me back to reschedule. It’s been a week and I’ve heard nothing. I’m just sick of being dismissed. Is this a normal response from doctors to patients? I’m I just being a difficult patient?

Only thing I can think that they’ve checked was the some blood test came back associated for connective tissue disease antibodies . RNP anntibody was positive .I’m wondering if that could be a component. I’m constantly complaining about my right knee after exercise biking or walking. Along with upper body scapula and upper spine pain . Addressed this with the doctor he said we’d do a follow up but that was almost a year ago and I have only been doing virtual visits due to the hospital being 3 hours away from me. I’ll make sure to bring it back up to him.

My heart rate is stable within the 45 resting and 70 - 80 active due to the ivabradine. Thanks for the advice

I’ve been doing some research on my pot’s because I have a virtual appointment with my doctors coming up and I would really like to get some more answers than I’ve been getting. Although I understand pots is complex. My doctors keep upping my midrodrine now I am on 5 mg x 3 a day. Despite blood pressure remaining stable I am still getting fatigued and somewhat orthostatic intolerant when walking. Doing leg stretching with band, salt tablets, etc.Doctors keep saying deconditioning but my family suspects something may be adding to my pot’s symptoms. When I was started having pot’s symptoms after a year and a half of no symptoms it was after I had undergone breast reduction surgery, the recovery left me very fatigued. During my pots discovery and diagnosed my ANA and RNP were positive. I guess I’m just wonder if my there is an underlying cause contributing to my pots. My neck and spine are constantly in pain ( I have a small hump on the top of my spine that I get from my mother). Along with the struggle with fatigue/Orthostatic intolerance when walking and moving despite blood pressure being stable when taking vitals. Lately my head has been tingling which I know is s side effect from the midodrine but it only occurs when I’m up walking and moving my body like for example trying to meal prep in the kitchen. The head tingling follows the disorientation/brain fog which makes it hard to remember what I’m looking for in the kitchen. My parents even say I get glossy eyed. Lastly my legs and feet has been pulsating? Like when I’m laying down I can feel the blood thumping? Any advice doctors can’t give me an answer just keep saying for the past 6 months do exercises which I have been doing religiously 10 mins elliptical/15 struggle of a treadmill walk/ and then my leg exercises. I just would like a plan of action if the “deconditioning” isn’t getting better since I’m still struggling. Also forgot to mention it’s like my abdominal muscles stop working taking fiber , drinking water, upright activity and still can’t go no matter what having to take laxatives to go. I thought maybe autonomic neuropathy/small fiber neuropathy because QSART should diminished sweating distal leg but skin biopsy was negative.

Thank you to everyone who gave advice talked to my doctors he wants me to take midrodine 5 mg x 3 a day. I had my appointment with the balance test and audio test for vestibular testing. There’s nothing damaged with my inner ear or inner ear nerves. Still have an apportionment with an otolaryngologist to look at my neck and brain hopefully I get answers for the woozy / disoriented/ dizziness.

Thank you I have a Bluetooth one that my mom just got me. I’ve been taking measurements 2 x a day for the past 2 days. I’m noticing even when my blood pressure doesn’t drop as much I’m still symptomatic especially when standing. My doctor have me lying down for 5 minutes, sitting for 5, and standing 10. However I can’t make it to the ten minute mark and am struggling trying to keep myself conscious at the 5. I don’t know if it’s the blood vessel in my legs not constricting enough, if my blood can’t get to my head /reduced blood flow/low cardiac output, or if I’m getting flooded with adrenaline. I’m just always symptomatic walking or standing high , normal , or low blood pressure?I’m gonna ask my doctors about this. I’m wondering why I’m getting the lightheadedness considering I’m on midrodine 3 x a day 2.5 mg. here are the measurements Laying down 5 minutes HR: 60 Blood pressure ; 114/81 Sitting 1 minute : HR: 59 Blood pressure: 114/92 Sitting 5 minutes: HR: 61 Blood pressure: 108/70 Standing 1 minute HR: 68 Blood pressure: 113/89 Standing 5 minutes HR: 78 Blood pressure: 114/76 Standing 10 minutes HR: Blood pressure: had to take a break spaced out lightheaded

Thank you to everyone who gave advice I’m going to contact my doctors and send them a message. I’ve been having bad palpitations today this was my systolic number should I be concerned ?

Thank you for the reply? When I bring this up to doctors what beta blocker do you recommend or has worked for you. Does ivabradine cause lightheadedness?

I’m still having lightheadedness pre syncope despite my vitals being normal. My lowest was 105/71 heart rate 74. Highest after going up the stairs was 125/85 heart rate 96 this fluctuation occurred within 7 minutes. I was trying to cut up some snacks in the kitchen and I was already dizzy before but my blood pressure wasn’t bad. As I started to move around more I got dizzy but vitals not low. On midrodine which keeps my blood pressure from dropping low but I still have lightheadedness. The other day I was so symptomatic I had to use my wheelchair to go out with my mother I stood us to go to the car after exiting store and my blood pressure was 110/59. I don’t know what to do. Messaging my doctors and they are saying it’s deconditioning and could take time however it’s been a year since diagnosis and on ivabradine. most days I can workout but the lightheadedness has been a persistent symptoms since I was 14 and the dysautonomia started. If I do complete my treadmill walking workout I’m wiped out for a couple hours. But walking around stores is hard for me , since I symptomatic. I’m taking in 100 oz water , 5000 mg salt, and I always wear compression knee highs when I go out. I don’t want to badger my doctors since I am a complicated patient but my quality of life is being effected. Better than it was before the diagnosis but I feel as if I’ve hit a brick wall. Any one know what to do? What I should ask my doctors?

Thank you for this I’m going for vestibular testing I believe it may have something to do with cervical or spine. I noticed when I get dizzy and disoriented if I don’t stop moving or sit I will eventually drop. I also have this constant pain and tightness in my neck /trapezius I have a massage machine but the pain always is there and gets worse when I get dizzy.